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Mediaplanet’s Rare Disease Campaign

Happy to support Mediaplanet’s Rare Diseases campaign. The campaign is distributed through The Independent newspaper on 29th February, distributed at world leading events and is published online on Health Awareness. Learn more here: http://www.healthawareness.co.uk/rare-diseases  

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Get Involved – Rare Disease Day 2016

Rare Disease Day takes place on the last day of February each year. This year its the 29th February 2016 The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases…

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Tim Martin Fundraising Lunch

On February 5th 2016, Tim Martin together with Ellen and Laura Bletsoe raised over £30,000 for BDFA during a Fundraising Lunch Event at the City of London Club. Tim Martin met Ellen at an event they both attended last year. …

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(HRH) The Countess Of Wessex – Shooting Star Chase Hospice

Her Royal Highness (HRH) The Countess of Wessex put her artistic skills to the test when she joined supported children and families for some cake decorating at Christopher’s on Tuesday 9 February, as part of our Guildford-based hospice’s 15th birthday celebrations.…

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BATCure Kick Off Meeting

The first meeting of the BATCure group took place at UCL in London on January 27-29. It was a very exciting to finally be starting on the project with over 30 scientists, research students and clinicians attending from Denmark, Germany,…

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Run 10K For The BDFA

Is your New Year's resolution to get fit and have fun? And to raise money for the BDFA whilst doing it? Then sign up for the Vitality British London 10K, staged through the heart of central London passing many of…

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Video – Family Networking Weekend 2015

This October our Family Conference was held at the Village Hotel in Coventry. Families, staff and professionals started arriving on the Friday, meeting up with old friends and making new ones. The AGM on Saturday morning, included a keynote speech…

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Good Morning Britain’s ‘Tough Mums’ – Jenny Shackleton

We already knew she was tough, running over 150km of muddy obstacle races this year raising money for the BDFA, and now it's official. Jenny Shackleton has been chosen as one of ITV's, Good Morning Britain's 'Tough Mums'. Watch this Thursday…

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Dr Claire Russell’s Lab At Royal Veterinary College, London

Invitation to Dr Claire Russell’s Lab at Royal Veterinary College, London Friday 25th September 2015 11am-4pm Royal College Street London NW1 0TU

Recreating NCL (Batten disease) in animals allows us to understand what processes go wrong in the disease and enables the testing of new therapeutic approaches. In particular, zebrafish have unique features which make them easy to study and manipulate to help us to better understand these diseases.

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Cycle To The Circle – Read About The Journey!

The Cycle to the Circle team have made it! You can read about the amazing journey and why they have done it here - Words form the team on completion - Worth it for 'the cause'. A big thank you to BDFA,…

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